The Centers for Disease Control and Prevention (CDC) works with partners to conduct research to better understand Tourette Syndrome (TS), including the prevalence of TS, the quality of life among people affected by TS, risk and protective factors associated with the impact of TS, and health risk behaviors associated with TS. Results from this research are used to better inform public health efforts to improve the lives and health outcomes of people affected by TS, to implement education programs to help improve the quality of life of those with TS and their families, and to inform future research.
CDC conducts research to:
- Find out how many people have TS and the characteristics of people with TS.
- Determine the impact of TS on individuals; families; and communities, including schools.
Bridging the Gap between Public Health and Tourette Syndrome
The National Center on Birth Defects and Developmental Disabilities is working to improve the systematic understanding of TS, and the health and well-being of people affected by TS. The approach is based a summary report on TS that highlights gaps in knowledge and resources that can be addressed by public health. The report was informed by a literature review and expert panel, and describes public health activities that are needed.
Prevalence and Characteristics of TS
It is important to know how many people have TS (prevalence). The CDC is using data from national surveys to understand the impact of TS on individuals and their families. By studying the number of people diagnosed with TS and other tic disorders over time, we can determine whether the number is rising, dropping, or staying the same. We also can compare the number of people with TS across different areas of the country and among different groups of people. This information can help identify causes of TS and help communities plan for services.
Understanding the characteristics of people with TS helps researchers at CDC to better identify groups of people who might be at greater risk for TS, as well as groups who might be less likely to be diagnosed with TS. This information helps researchers at CDC focus future research and outreach activities.
Following are activities that CDC conducts or funds in order to learn more about the number of people with TS:
National Survey of Children’s Health
CDC conducts a nationally representative survey that provides data on health conditions among children in the United States, called the National Survey of Children’s Health. Information on TS was collected for the first time in 2007-08, and again in 2011-12.
In that survey, parents were asked if their child had ever been diagnosed with TS, whether or not their child currently had TS, and about the severity of TS. This allowed us to calculate prevalence estimate of diagnosed TS based on a nationally representative sample, as well as information about the prevalence of co-occurring conditions and characteristics of children who had been diagnosed with TS. Additional analyses of this survey are ongoing.
The data showed that approximately 1 out of every 360 children 6 through 17 years of age in the United States had been diagnosed with TS; this represented about 138,000 children. [Read article on 2007-08 data] [Read summary of 2011-12 data]
Overview of Other Research Activities
- Funding four sites as part of the Project to Learn about Youth - Mental Health, a community study looking at how frequently certain mental, behavioral, emotional, and tic disorders occur in school-aged children and how those disorders are treated.
- Funding the development of a screening tool to improve the early identification of children with tics.
- Funding an update of the Diagnostic Interview Schedule for Children to use as an accurate diagnostic interview for mental, emotional, and behavioral disorders including TS.
- Leading research to better understand symptom onset, diagnostic process and timing, and treatment of TS using data from the National Survey of the Diagnosis and Treatment of ADHD and Tourette Syndrome (NS-DATA), a follow-up survey of families who participated in the 2011-2012 National Survey of Children’s Health.
- Increasing our understanding about tic disorders and their impact on families and communities through collaborating with the University of Rochester and the University of South Florida.
For More Information
- Page last reviewed: May 23, 2016
- Page last updated: May 23, 2016
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